Making the right decision

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Cherfd
New Member


Date Joined Sep 2007
Total Posts : 14
   Posted 9/8/2007 11:16 AM (GMT -7)   
Hello Everyone,  I just joined this chat room and this is my first time using chat.  My friend was telling me about chat rooms for help, sooooo here is my question? We just found out last week my husband has prostate cancer.  The doctor gave us some reading material and told us to read up on the options then we would meet again for a consult on 9/18/07 for further discussion.  He did not want to give us his opinion at that time because he wanted us to decide what treatment we felt was best for us before he had a chance to influence our decision. After reading everything we could get our hands on and all the contradictory findings on each procedure we are now confused.  Does anyone have any personal experiences to help us better understand?  They all seem to have side effects and yet all the percentages seem to vary so.  We are based on what we have read leaning towards the seed implant or prostectomy.  He is in early stage cancer and it has not spread outside the prostate.  We did not ask what the Gleason score was, but we will find out on the 9/18 visit.  Thank you all.
P.S. Hope I did alright on my first chat.

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 9/8/2007 11:39 AM (GMT -7)   
Welcome! My husband and I are at about the same point, just a little ahead of you in terms of getting the news and researching options. You'll find (as you're finding already) that there is no "right" choice but rather multiple choices that will give essentially the same results with differing side effects. My husband's doctors believe his cancer has not spread outside the prostate, so he is considering robotic surgery and brachytherapy (seeds) and leaning toward the latter choice at this point. At first he felt he'd be more comfortable with surgery, knowing the prostate was removed, but then realized there's never really a guarantee that every last cancer cell was removed during surgery. It's a tough decision. The best advice is to read everything you can lay your hands on, as you are doing, and make a decision that you and your husband are most comfortable with.

Husband Age: 58
Stage: T1c
Gleason: 6 (3+3)
PSA: 4.4
Biopsy: 12 samples, Adenocarcinoma involving 3 cores, right side only (95%, 90%, 30%, discontinuously)
Still researching options


Cherfd
New Member


Date Joined Sep 2007
Total Posts : 14
   Posted 9/8/2007 11:43 AM (GMT -7)   
Thank You Mike's Wife for your input. We are also leaning towards the brachytherapy as our first choice and surgery as our second, depending on what the doctor's advice is also.

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 9/8/2007 11:57 AM (GMT -7)   
Hi Cherfd,

I certainly wish you and your husband didn't have to be here, but you've come to the right place. there are so many factors involved in making the right treatment choice that without knowing more details specific to your husbands Rx we are flying blind. The only thing that I'm confident in saying is that regardless of the procedure; it is imperative your choice is the most experienced physician you can get.

All the other details: age, physical condition, PCa stage, and personal preference will factor into your decision. Please post as much detailed information as you can.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. margins
DaVinci surgery on 02/23/06
Last PSA 08/26/07 @ 18 months "0"


Cherfd
New Member


Date Joined Sep 2007
Total Posts : 14
   Posted 9/8/2007 12:10 PM (GMT -7)   
Thank You for the reply, spinbiscuit.  I hope I am replying to the messages correctly. I am assuming you mean the gleason score or further information on the actual report status. When I have that I will post.  Thank You again.

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 9/8/2007 12:21 PM (GMT -7)   
Cherfd,

That is correct, and it will help us all to respond in greater detail. Till then good luck to both you and your husband, and as tough as it may seem don't let all this overwhelm you.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. margins
DaVinci surgery on 02/23/06
Last PSA 08/26/07 @ 18 months "0"


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/8/2007 12:29 PM (GMT -7)   
Quote from Cherfd ~ on a different (new) thread... helping to keep this information together. 
 
I guess I left out a few detail, sorry.  My husband is 52 in good health otherwise works out regularly, hikes and quit smoking almost 2 years ago.  His PSA score before the biopsy was 8.3.  The biopsy report (which he didn't get a copy of) stated that out of 12-14 core sample (if I am using the proper terminology) only 1 had signs of cancer and it was 5%.  I don't know if this in an average of bad or good outcomes.  I only know the doctor said that the prostate should be taken care of or removed completely.  I hope this helps some. 
Thank You again, appreciate any replies.

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/8/2007 12:29 PM (GMT -7)   

   You did fine for the first post.  A little info as to your husbands age and diagnosis numbers such as number of positive biopsy cores, psa, gleason....will help everyone understand your situation a little better.

    If you go back a few pages and find "KW's Journey" you will see that I am one of the few that have had a lot of trouble with incontenance after RRP (Radical Retropubic Prostectomy) surgery.  But I have had all 0.00 PSA's post op, the ED functions are getting better with and without Viagra.  I have no pains or other problems.  Over all I can not complain.  The incontenance is not pleasant to deal with but I'm workin on it. 

    You and your husband need to read info, talk to others, get second / third opinions.  Ask your Dr. how much time you can take to make your decision.  Overall...make the decision that is right for you.  Then go after it with all you have!

    Good Luck..

 


    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/8/2007 12:40 PM (GMT -7)   

Hi ~ Cherfd & Loved Ones,

A "Special" Warm Welcome to You!

This is truly a great forum!!! ~ "You" have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey.

Thank you for joining all of us on this road to HealingWell…..

KNOWLEDGE IS POWER... and POWER conquers fear

* bluebird ~ Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

(Direct Link ~ just click on the title below and a new window will open!

Reminder … click on the REFRESH icon once you get there)

Prostate Cancer Resources, Helpful Hints, and Topic Thread Links

http://www.healingwell.com/community/default.aspx?f=35&m=52996

(Located at the top of page 1,2,3… 65,67… on the Prostate Forum : )

Invitation to New Members… Welcome to HealingWell (Special Request)

http://www.healingwell.com/community/default.aspx?f=35&m=902976

I hope this message comes through clearly ~ I'm traveling and the settings are "funky" here!!! Stay close ~ okay... In New Friendship ~ Lee & Buddy

edit to activate links


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

Post Edited (bluebird) : 9/8/2007 5:32:04 PM (GMT-6)


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/8/2007 12:50 PM (GMT -7)   
Cherfd,

If you can get ahold of the latest edition of Dr. Walsh's book on Prostrate Cancer, I think it will help you with your decision process.
So many things to consider:  other health issues, age, life expectancy in your husband's family, any insurance or funding limitations, side effects of treatment options, ... ,
so many things that only the patient can consider properly.

I recommend that after you do your research and make a decision with your doctor, then
     you make another appointment with another physician in
     the most respected medical facility you can access to review
     your decision and to discuss any options or factors you may have overlooked.
I cannot stress enough how important this second opinion can be, even if it just endorses your original decision.
 
Please keep in mind, you will find the many (sensitive and intelligent and informed) women here in this forum can help you with ANY relational issue that comes to your mind.

Feel free to ask questions or just let us know how you feel.  You are among friends.
Also, when you have time, look through the Helpful Hints thread at the top of the page.
After you open it, scroll down several postings and you will see that Ms. Bluebird has indexed the members' journeys and other topics.  These postings can inform and spark questions that you can ask your physician and/or the members here.

CCedar
ICTHUS!



2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 9/8/2007 1:57:47 PM (GMT-6)


mijac001
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/8/2007 3:32 PM (GMT -7)   
I am 50 years old.  PSA 4.1 Gleason 3+3.  Had HDR brachytherapy 8/7/07.  Two days in the hospital, four treatments.  Home 2nd day at 1:00 am.  Have had no side effects outside of some urinary urgency, and a little more frequent than before.  No problem with E.D.  Take cialis three times a week, but will discontinue after 3 months.  Am told will dissipate in time. My wife was diagnosed with breast cancer three days after me.  She is half way done with her chemo and then will deal with six weeks of radiation and a year of herceptin and tamoxifen.  I feel like my situation is much more manageble then hers.  I think brachy was a great choice given the ****ed up situation we are all in. Am hoping for a nice gradual decline in PSA, and am expecting to live a long life.  Good luck to you. 

Cherfd
New Member


Date Joined Sep 2007
Total Posts : 14
   Posted 9/8/2007 3:49 PM (GMT -7)   
mijac001, Thank You for your reply.  I am still trying to figure out how to use the features of this chat site.  I hope this gets to you.  As stated in my previous post brachytherapy is our first choice so far, the only thing that bother's me is there is no long term studies-have you heard anything?  Was it explained to you what happens to the seeds after all the contents was displaced?  As far as I understande it is between 40 and 120 pellets, so to speak and they are metal. Is that correct?
Thank You for your reply again, and my heart goes out to you both, I hope you both have a speeding and sucessful recovery.

mijac001
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/8/2007 3:52 PM (GMT -7)   
A nice website to visit for personal experiences www.yananow.net

mijac001
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/8/2007 4:07 PM (GMT -7)   
You can copy and paste this link into your browser. It is a discusion of the differences between temporary and permanent seeds.
I did HDR or temporary. Catheters are placed directly into the prostate through the perinium, a high dose of radiation is injected and then removed. This was done four times over two days. Permanent seeds are what I believe you are referring to. Seeds are implanted in much the same way, but only once and remain, giving a low dose of radiation over time. I wouldn't be concerned about the seeds. They dissolve over time. e-mail me if you like: (edit)

http://www.jmp.org.in/article.asp?issn=0971-6203;year=2006;volume=31;issue=4;spage=239;epage=241;aulast=Das
 

edit: Click here to activate e-mail: http://www.healingwell.com/community/default.aspx?f=35&m=837307   Communicating with members via.... HW web-based e-mail **

Click here..>  bluebird ~ prostate forum moderator.  I will be happy to relay e-mail address. 

Post Edited By Moderator (bluebird) : 9/9/2007 9:15:05 PM (GMT-6)


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 9/8/2007 4:16 PM (GMT -7)   
Hi, Cherfd. Sorry about your hsuband's diagnosis. All of us here have faced the same questions you gys are. A good start is Dr Walsh's book, as Cedar already recommended. Also, go to the top of the Prostate forum and click on Bluebird's "helpful hints and threads." You'll get a lot of information about how others' made their choices and threads devoted to different treatments. Mine's not in the list yet, but if you go back a few pages on the forum directory, you'll find it -- Puget's Passage. I chose robotic surgery and have done well. Stay with us as you begin your PCa journey. Godspeed.

puget
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 9/13/2007 11:11 AM (GMT -7)   

Cherfd:

"Welcome" for lack of a better word.  My husband opted for Brachytherapy - if you have ANY questions, please don't hesitate to ask - there is no such thing as an "embarrassing" question here - we'd rather you be fully informed when making such a decision.


War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/13/2007 3:22 PM (GMT -7)   

Cherfd,

Welcome, welcome, welcome. I am new here, too. But I have found so much love and kindness in the postings.

The choice on "what to do" is up to you and your husband. My advise is to read, consult with several doctors, and pray. You will make the right choice.

Speaking as a patient, my wife was a key factor for me. Her love, understanding, and care made everything so much easier. You will find that so many things in life will lose there importance as you both travel down this path together. Faith and love will bring you through. Good luck. You are in our prayers.

War Eagle to all.


Age: 54
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007
Casodex 4/2007
Spread to Spine, rib, and pelvis
Zometa infusions 4/2007
PSA 4.9 8/2007


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 9/13/2007 4:16 PM (GMT -7)   

Since you are choosing YOUR way to becoming a PCa survivor, I'm glad you found this site - lots of good info and support here.

As to the treatment choice, you must decide what your parameters are for the invasiveness of the treatment and what side effects you are willing to accept, then research, research, research.  I felt I had caught my Pca early - I wanted no part of surgery, was concerned with migration of seeds and its possible urinary problems - that left external radiation.  Since I was going to take the 2 months required for this I choose proton over IMRT/IGRT as in research the side effects appeared less.

Wishing you good luck in the treatment that best suits YOU.

Dutch 


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 9/13/2007 4:37 PM (GMT -7)   
I could be wrong, but I don't recall anyone saying that they had made the wrong treatment choice.  The choice that you make will be based on your priorities and taking into account age, profession, general condition, etc. so the choice that you make will no doubt be the right one.  No one here will ever tell you that you should have known the answer to a question that you have asked, but if you have the time (and it will take some time) you can read back over the posts and you will find a wealth of information re treatments, effects, side-effects, things you can or can't, should or shouldn't do and on and on.  Read and digest, but our individual knowledge varies greatly about medical stuff and we are here because we are patients or, like you, a spouse of a patient.  My surgery will be three weeks from today and I have learned so much from these great people and, as I get closer and think of more questions, I will be learning more pre-surgery and will no doubt have a lot more questions afterward.  If we were all the same one person could describe his experience and that would do it for everyone, but it doesn't work that way.  I've said it before and here  it is again:  it's always your turn to talk and no one will interrupt, talk slow or fast but it will always come out just the way that you want it, or you can just stand back and listen, you can drop in anytime day or night and it's always the perfect time and you'll be sitting down with friends and family.  Enough said, and it's back to the weather radar for me.  GTM
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